Hi I had a total thyroidectomy about 6yrs ago and was put on levothyroxin, since then my tsh has been up and down, I have been seen by endocrinology Dr 2yrs ago who did all tests found I was vit d deficient and decided to put levothyroxin up from 100mcg by adding 25mcg to be taken at weekends, I was also asked to take it at night which I do, since then I have been hyper then hypo again have all the symptoms of hypo, I have got appointment next week with gp just wondered if anyone else has had same problem and found a solution.

7 Replies

  • Welcome to our forum Lindyb59

    We have to read and learn when we aren't getting well on the treatment the GPs/Endos suggest.

    We don't get well when they keep adjusting doses up/down just to keep the TSH 'somewhere' in the range. We need a TSH of 1 or below.

    My personal opinion is if someone has had a thyroidectomy that levothyroxine alone is a poor solution for many. Some T3 should be added but it has become so expensive in the UK that NHS won't prescribe usually. Members now source their own but no details are permitted on the open forum.

    First, the procedure for getting a blood test is to make it the earliest possible and it is a fasting one although you can drink water. Also allow 24 hours approx between your last dose of levo and the test and take it afterwards.

    This allows the TSH to be at its highest as food etc can affect the result and wont skew results.

    If you've not followed the above procedure ask for a new test and if GP wont we have recommended labs to do the suitable ones.

    Always get a print-out of the results/ranges for your own files and post if you have a query. Also you should have a Vit B12, Vit D, iron, ferritin and folate done as we are usually deficient and can cause symptoms too.

  • Thank you you have been most helpful, I was thinking about asking gp what he thought about adding t3, if I don't have any joy with gp I am going to get private help just so tired of feeling unwell, thanks again.

  • Are your tests always done at the same time of day every time, and fasting? 24 hours after your last dose of levo?

  • Its usually same time of day but was never told it was fasting and i take before bedtime so it wouldn't be 24 since last dose. I will make sure I dont take levo for 24 hrs before test. thank you.

  • No, doctors don't know that eating lowers your TSH.

    TSH is highest first thing in the morning, and lowers throughout the day. And, if you take your levo within 24 hours before the test, it will raise your FT4. Don't take it the night before the test, take it after the test, the next day. Then, that night, take it as usual. As it is a storage hormone, it really won't matter. :)

  • Thank you so much I have learnt so much I will let you know how I get on.

  • You're welcome. Good luck! :)

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